Alex’s Glow Story

Posted on 2019-06-06

“There’s something in her eye.  I don’t know if it’s a tumor or something else, but you need to get this checked out RIGHT AWAY!”….

And that’s what he told me.  He was the doctor, and I thought I WAS getting her checked out.  Not just a doctor, he was a pediatric ophthalmologist. This man, this “specialist”, left me with that – a referral.  I walked to the reception desk, 7 month old and almost two-year old in tow, in shock. The ladies worked on getting me an appointment with another doctor.  One of them said a word I had never heard before, but I distinctly remember hearing “blastoma”, and then the overwhelming fear and panic set in.

We made this appointment because when she was about 4 months old, our baby girl Alex’s right eye started wandering.  I have relatives with “lazy eye”, so we initially didn’t think much of it. But, as any mother will tell you, intuition takes over.  One night, I felt so anxious and concerned about her eye that I just couldn’t fall asleep, but my husband (the rational one) calmed my nerves.  Even our pediatrician seemed confident it was something that could be easily fixed. However, we went from lazy eye to potentially cancer in an instant.

The initial appointment started out fairly innocuous; they put drops in to dilate her eyes, and we waited.  My husband (Scott) is a firefighter and was on shift for 24 hours that day, so I flew solo to the appointment, taking our 22 month old son, Lucas, along.  During the exam (which only took a few minutes), the doctor flashed the light scope into Lucas’s eyes as well. It struck me as odd, but knowing what I NOW know about Retinoblastoma, it was entirely expected and appropriate.  I left that office in a haze. I would have to take my babies home, sleep alone, and wait until tomorrow to find out whether or not my sweet, innocent, helpless infant had cancer.

The referral we received was to another pediatric ophthalmologist, Dr. Amy Leverant, who specializes in Retinoblastoma (Rb).  We met her the very next morning, her first appointment of the day. She asked if we knew why we were there. We nodded, and the words she said next were so incredibly impactful to me.  “To rule out Retinoblastoma” – these words gave me hope. The entire day and night before, I had tried immensely to stay positive, but my inner mom voice refused to be silenced. I had convinced myself my baby had cancer, and here was this doctor telling me maybe it wasn’t so.  But within a few minutes, that hope was lost. She confirmed the Rb diagnosis. Let me make one thing very clear – Dr. Leverant is absolutely amazing. She is fantastic at what she does, she’s compassionate, caring, realistic, and empathetic – all of the things that make a great doctor. In that moment, however, I didn’t want to believe her.  I wanted to scream at her, tell her she was mistaken, demand a second opinion, ask for her credentials, etc.  But deep in my heart, I already knew how accurate and spot on her diagnosis was.  

Conversation ensued to the extent of which I couldn’t begin to process at the time.  Words started being thrown around my brain, words like genetics, mutation, chemotherapy, cryotherapy, lasers, enucleation, etc.  It was all too much; I simply couldn’t hear it right then. She apologized for not having more time to spend with us, and sent us for an ultrasound.  The ultrasound confirmed the diagnosis again, but this visit renewed my spirit with a little bit of hope. The ultrasound found ONLY one tumor.

In the less than 24 hours I had to research Rb, I learned enough to know that multiple tumors is something I did NOT want to hear.  Multiple tumors is an indication of hereditary (or germ-line) Rb which comes with greater risk of additional tumors and additional cancers in the future.  When we left Dr. Leverant’s office, I had convinced myself that Alex was NOT a hereditary case and that she would be fine. The following day Alex had an exam under anesthesia (EUA) and an MRI.  These tests confirmed the ultrasound findings – there was only ONE tumor, and it was a grade B. Grade B just meant that it hadn’t grown all that large (typically the scale is A through E). It was time to discuss treatment options.

While the EUA and MRI only found one tumor, that didn’t necessarily mean Alex did not carry the Rb gene mutation in her DNA.  We’d have to wait several weeks for blood test results on that front. So our first objective was to annihilate the tumor. I was petrified at the thought of my baby having to undergo chemotherapy.  Either that would just make the cancer all too real, or I was reeling from a recent experience. My step-mom had recently undergone chemotherapy to fight lung cancer, and it nearly killed her. But there was one type of chemotherapy that we had recently learned of – intra-arterial chemotherapy (IAC).  Dr. Leverant had mentioned it briefly during our office visit but had also mentioned the caveat “but she’s so small” in the same breath. Over the next few days my husband and I did extensive research on treatment options. Dr. Leverant supported IAC as a treatment option but did not try to influence us.  This single utterance from her….makes her who she is…”First we save her life, THEN we save her eye, THEN we save her vision”. We felt confident with IAC but didn’t make the decision until we met the doctor who would perform the treatment.

Dr. Felipe Albuquerque, a neurosurgeon, was the doctor tasked with performing IAC treatments for Dr. Leverant’s patients at that time.  We met him, along with his intern, in his office within days. He had performed a handful of IAC treatments at that point, and Alex would be the smallest patient he would work on to date.  I’d be lying if I said that didn’t concern me, but he had a calming effect on me. He told us that of the procedures he performs, this one was on the low end of the difficulty spectrum, and he was very matter-of-fact in letting us know the potential issues that could arise, along with ones that would result in him aborting the procedure.  IAC involves threading a small catheter into the femoral artery and threading it through the path of arteries through the body, all the way into the ophthalmic artery. Once placed, small doses of chemotherapy drugs are pulsed directly into the eye over time. The risks are considerable. Ultimately, we decided to move forward with the procedure and were scheduled for the following week.

We arrived at the hospital early in the morning to prep for surgery.  This meant no eating or drinking for Alex the entire day. At 7 months old, this was no easy task, but Alex did great.  The surgery took what felt like forever. Dr. Albuquerque met us in the waiting room and explained the delay. He had difficulty getting through the arteries and didn’t rush.  We could go sit with Alex while she was sedated. The sedation was for 4 to 6 excruciatingly long hours. They do this to minimize the potential injury to the femoral artery. Scott and I sat by her side and waited.  After some time, seeing her laying there with the oxygen mask on, hooked up to machines, not moving…it was just too much for me. I took a walk and spent some time in the chapel. It was time for God to step in.

My husband and I are Christians.  We attend church on a regular basis, serve here and there, and attempt to engage in small groups when we can.  There’s lots of room for us to grow as Christians, but that’s another story. At Scott’s prompting, we took our family to the prayer request area after service that Sunday.  We told them our story, and a man and a woman embraced us all and prayed for us. Afterward, the man told us the following: “You know what? She’s gonna be fine. God’s gonna step in and work his magic, and the doctors aren’t even going to know how to explain it.”  I knew he was trying to comfort us, and the notion was greatly appreciated. If you’re reading this and wanting to call “BS” to this, I don’t blame you. Trust me, I felt the same way. But would you believe that’s exactly what happened? Four weeks after the treatment, Alex had another EUA to see how the treatment worked.  We read, researched, reached out where we could, etc. and had prepared ourselves for probably three or so rounds of this treatment. When Dr. Leverant came to speak to us, we were ready to schedule the next round. But she didn’t have typical results for us. She had what she described as “jaw dropping” results. The treatment shrunk the tumor so much that all that was left was a couple small pieces of calcified (dead, not growing) tumor.  The OR nurse told us there were tears in the room when they all saw the scans. And that was the last treatment Alex has had to date.

That exam was just under 18 months ago.  Alex has had several EUAs and one MRI since, and all have shown the same results.  The tumor hasn’t changed since that treatment. Dr. Leverant sent those initial scans off for a second opinion, and the opinion was essentially to do nothing – to watch for any changes.  Alex never experienced any of the typical chemo side effects. Her eye is sensitive to bright light, and we notice that her pupil doesn’t refract as quickly as her “good” eye, but beyond that she is a healthy, spunky two year old today.  Her blood test results confirmed she is NOT germ-line (score one for mom instincts!), and she’s developing just like any other kid.

Before this ordeal, I had never even heard of “the glow” or Retinoblastoma, or Coat’s Disease, or really any of these things.  Naturally after that first appointment, we started examining any and all pictures we’d ever taken. There was one picture that will forever be etched into my memory.  When I originally saw it, I remember thinking something was off, but I couldn’t quite put my finger on it. Funny, it wasn’t even a flash picture, but if you look closely, you can see a distinct difference between the pupils of both eyes.  That picture was taken in February of 2017; our first appointment was in May of that year. Three months went by; three months where we could have done something but didn’t even know something needed to be done. I wish we would have known about “the glow”.